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Mild (according to doctors) UP question(s)

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Ulcerative Colitis
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Posted 8/10/2015 1:37 PM (GMT 0)
Good morning all.

I am a bit frustrated and in pain this morning. I would appreciate some advice. I was diagnosed with UP in 2009, I know I have had this much longer, that is just when I found a better doctor. (I do like my doctor and feel like he is a good doctor) My meds listed are correct, Apriso 4 pills 1 time a day and VSL#3 at least 1 time a day during a flare 2 times. Canasa suppositories during a flare. I don't have any relief with the Canasa. March of 2014 I had my gallbladder out due to a HIDA scan showing that it wasn't working.

My question is in regards to my symptoms. I feel that my symptoms don't follow UP symptoms. For instance Saturday evening my stomach was getting crampy and felt like I may need to run to the bathroom. No bathroom trip was needed, I just showered and went to bed in hopes to relax and get the cramping to go away. Sunday morning I woke up feeling like someone was kicking my belly all night long. I ate a small bowl of cereal with coconut milk as I don't do well with dairy. Within 1 hour of eating I was getting really bad cramping again. I took a tylenol with codeine in hopes to stop a trip to the ER. It slowed the cramping down, however I did have 4 BM's over the next hour. All soft, no blood, minor mucus. Then all of a sudden running to the bathroom feeling like I needed to go again. However this time I got super light headed, I felt like my stomach was going to explode, profusely sweating and thank God my husband had came home because I then passed out. After passing out I laid in the bathroom for a couple of hours, then laid in bed the rest of the day. Woke up this morning to a very sore tummy and some mild cramping. This will probably last the rest of today and tomorrow I will feel just fine.

This is the 3rd time this year that this has happened. The 2nd time it happened earlier this year I couldn't stand the pain and went to the ER. They did a CT scan which showed major inflammation in my colon and admitted me for a day and a half. Sent home with awful Prednisone at 40mg and spent the next months tapering off of that horribleness. Follow up with my GI couldn't find much. Even my next colonoscopy showed no active UP.

Could this be something else? I feel like instead of weeks at a time of urgency and need to go. My hit me suddenly and out of nowhere, last for 2 days and then its gone.
Posted 8/10/2015 2:03 PM (GMT 0)
It sounds like you are flaring. Those are classic symptoms of a UC flare. It could also be something like c. Diff. But either way you got to contact your gi and let him know what's going on
Why don't you take the max dose of your mesalsmine to help ward of this flare.
Codeine can actually make it worse as it slows down your gi tract and can trap in toxins. The two ibd safe pain meds are Tylenol and tramadol.
Ask your gi for w prescription for that over codeine and Tylenol
Alternating hot and cold packs can help with the pain quite a bit
Good luck
Posted 8/10/2015 2:11 PM (GMT 0)
They did a CT scan which showed major inflammation in my colon and admitted me for a day and a half.

Er, that's not mild UP by a long shot.

Oh wait, you had a colonoscopy after that which was completely clear? How long ago was that? I'm guessing from your symptoms the colitis has returned.
Posted 8/10/2015 2:23 PM (GMT 0)
The CT scan/hospitalization was in mid January. The colonoscopy was in February, after being on pred for several weeks.
Posted 8/10/2015 2:41 PM (GMT 0)
the prednisone is just a bandaid it reduces the inflammation while you are on it but the inflamation usually returns once its stopped unless there has been a maintenance plan set up for after the prednisone
Posted 8/10/2015 2:58 PM (GMT 0)
the change from the CT scan to the colonoscopy is dramatic even with 40mg pred/day. That is not a super high dose of pred. I think biopsies taken during scope would have shown signs of chronic inflammation even if the inflammation had been beaten back for a few weeks.

it is odd. but it could be as simple as IBS secondary to IBD. given the galbladder history, to would be reassuring to have a more complete workup.

I don't know what you can do besides talk to you GI.
Posted 8/10/2015 6:41 PM (GMT 0)
Thank you.
Posted 8/10/2015 7:06 PM (GMT 0)
Your mtnc meds are not good enough to keep you in remission. That's why this keeps happening. I would switch the Apriso out altogether for a different oral mesalamine and I would try using Canasa two times per week when you're feeling well and every day when you're not.
Posted 8/11/2015 12:15 PM (GMT 0)
I have had similar symptoms in the past and I know it's not fun! I agree with Dikid - the codeine could make things worse big picture. Heating pads and lots of ginger tea have been really helpful to me in the past for cramping and pain - hope you feel better soon!
Posted 8/11/2015 7:19 PM (GMT 0)
Sounds exactly like my first flare, my diagnosis was proctosigmoiditis. Severe cramps out of nowhere, dizziness, feeling like you have to go when you don't (its just your swollen rectum confusing you.) From lurking on this forum I see people saying an enema is better than a suppository for proctitis. They worked wonders for me.
Posted 8/11/2015 11:45 PM (GMT 0)
Sounds like a flare.

Anything that makes you pass out should be taken very seriously. Call your doctor.
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